Penguins and Blue Lips

Two things I learned very quickly in the first month after diagnosis is that everything sucks and I have no control. We'll call these lessons 1 and 2, respectively.

One thing I learned slowly over the first month is to avoid internet searches about cancer. If you want to spend the rest of your nights in a wide-awake, panic-stricken nightmare, try Googling HER2+ or mastectomy pictures. Trust me, you don't want to go there. This is lesson 3.

Now, as I learned these important lessens, I discovered something wonderfully distracting: The Rapunzel Project. It came at a very good time. I needed something to focus on that wasn't related to terrifying treatment options, facing my own mortality, or confessing my illness to my loved ones and watching their hearts break. Any little thing was bound to work.

The Rapunzel Project led me to Penguin Cold Caps. This is a system of frozen gel helmets that freeze your scalp in the hope that chemotherapy will not damage the hair follicle causing hair loss. The type of chemotherapy I will be doing (TCHP) is notorious for causing total body hair loss. I was intrigued.

After a few more days practicing lessons 1 and 3, I decided to test lesson 2 and take some control. We were going to freeze my head and see what happened.

My dad is a blessing and agreed to fund the project. This is an expensive experiment so I was so grateful for the investment. My mom, also a blessing, agreed to become an expert frozen hat assistant.

They said my lips were blue during that first treatment. I couldn't speak because it was so painful when they put the first one on. Tears ran down my cheeks and I held my hands in prayer position, something especially unusual for me. But, we did it. We even got better at it the 2nd round. And I still have all my hair...at least for now. I have completed 2 rounds of chemo. I'm 31 days from the first treatment.

Lesson #4: Do what you can, no more, no less. I needed that little bit of control and I took it. You can't imagine the joy I felt reading the Rapunzel Project and Penguin websites those nights alone at my house before treatment started, out of tears and running low on wine. There was something I could do, something I could try! That kind of freedom is a lesson in itself.

For those reading this about to start this path, everything does suck and you don't have much control. You already know that. But, don't feel ashamed to distract yourself, even in vanity. These little things can mean a lot.

Old Pros

Do you remember the worst day of your life? Prior to this I didn't. I had a vague recollection of a few really terrible experiences but I couldn't put my finger on exactly what day it was and the precise itinerary.

The day of the biopsy I told my boyfriend that I was currently experiencing the worst day of my life. But there was a worse day after that and an even worse day still.

I think now that we've begun treatment and that most of the shock has faded away I can catalog those earlier days as the worst. The way they described my illness and the way it would be treated was numbing and sharply painful at the same time. Learning about what would happen to me was far worse than what is actually happening to me. To be certain, the mind is far more capable of pain than the body.

I was in the chemotherapy room last week with my friend. We were cheerful, chatting and laughing. It was Friday. In walked a woman with her daughter. She was recently diagnosed and was doing what they call a "chemo teach." Thinking back to my "chemo teach," I felt enormous empathy.

She looked pale, mechanical. Her daughter was doing all the talking. Her daughter was carrying the binder full of terror the oncology nurse gives you and was taking notes. Her daughter smiled at us.

My friend and I felt like old pros. We both remember that day well. She had asked all the questions, carried all the stuff, and took careful notes that day. I could barely work a pencil. She had chatted politely with the other women in the chemo room. When I had opened my mouth to speak, tears came out instead. It was the worst day of my life.

It was a relief to know that was behind us. Here we were, in the very room that had scared me so much, giggling about nipple reconstruction and planning champagne for lunch. We had gotten past that terrible day.

I wouldn't have been able to convince the woman having her worst day that it gets better so I didn't try. Instead, I told her that I was using Latisse to try to keep my eye lashes during treatments. "I hear it works," I said, like I know all about it. I saw a quick flash of curiosity in her eyes. I hope I was able to give her something to think about, instead of all the scary stuff, on her drive home. I hope her worst day is behind her.

You Bitch

Ok, Body, not cool. I thought we were friends. I treat you with kindness and respect (whiskey notwithstanding). I compliment you every single day. I never talk shit. And most importantly, I trusted you. You bitch.

You have a made a terrible, terrible mistake, one that will never be forgotten.

But we can fix this. You need to work at it though. You need to work your ass off. And I'll work at it too and together we'll make this right.

If you do this for me, I'll forgive you for everything. I promise. I'll give you another chance and we'll be close friends again. I won't hold it against you. You just fucked up. Nobody's perfect. I know that. Just make it up to me.

Down to Business

Here's what we're working with.

• Right breast Invasive Ductal Carcinoma 1cm x 1.5cm
• Stage 1a
• Grade 2
• Triple positive (ER+, PR+, HER2+)
• Sentinel Node Biopsy: Negative
• Bone Scan: Negative
• Brain MRI: Negative
• Chest/Abdomen/Pelvis CT Scan: Negative
• BRCA Gene Mutation: Negative

It might not seem like it but this is actually good news, aggressive, murderous, unappreciated tumor notwithstanding.

The treatment is:

• TCHP (Taxotere, Carboplatin, Herceptin, Perjeta) chemotherapy once every 3 weeks for 6 treatments, then Herceptin every 3 weeks for total of 1 year
• Surgery
• Radiation (depending on surgery)

I've also got a sizeable team of alternative therapists to assist with the side effects. So, we've pretty much got it all covered.

Why does this tiny lump in this tiny boob need so much damn attention? Lots of reasons. HER2+ tumors are the icky kind that like to spread all over your body and kill you. So it must be dealt with swiftly and brutally. One reason that is top of my mind is that I'm young. I need to obliterate this thing so that I never have to do this again.

And so we're off...

Suprise! Alcohol didn't work.

I drink. I drink a lot. I assumed my blood was Kate Moss-thin. No such luck. I developed a blood clot in my left armpit because of the Power Port I had "installed" the week before.

A port is a little plastic device placed underneath the skin of my chest with a direct line to my vena cava. It is where they will administer the chemotherapy drugs.

I was adamantly opposed to such a thing at first. Pictures of them online varied from an obscenely repulsive alien trying to escape the chest wall to a door knob sticking out of one's torso. I'm an aerial dancer. I live in sundresses. I can't have strange stuff sticking out of me like a robot for all the world to pity. I demanded a talented surgeon and I'm glad I did.

It really isn't that bad. I'm scrawny so, yes, it does stick out a bit, maybe a centimeter or so. But, it saves me from being jabbed and bruised by newbie nurses with needles in the arm. Apparently, mine is particularly pretty. I've even been asked to model mine around the chemo room.

Blood clots, however, are not pretty. My arm turned purple and felt tingly. It was a little swollen. I could tell it was vascular so it was back to the doctor for an ultrasound. I was terrified my pretty port would need to be removed or worse. Instead, I used a heating pad and was put on Xarelto, a blood thinner that doesn't have alcohol restrictions.

The only thing that sucks is that is does restrict my exercise. I can't lift much without aggravating the clot which means continuing my aerial silks classes is right out. I'm crushed by this, especially because I anticipate keeping the port for the full year of treatment. I miss being in the air a lot.

On the bright side, my boyfriend and I had an unforgettable moment at a folk music festival. A drunk bartender asked what the lump in my chest was and I was able to answer without crying. My man gave me a very precious compliment about answering the drunkard with grace.

Every day is an up and a down.

I Win

It is amazing how singularly focused one becomes. In one blink every problem, every single thing I worried about, was gone and replaced by this one thing. Immediately, nothing was more important, nothing higher in priority.

This unfairly applies to other people as well. Suddenly, your crappy job, your parking ticket, your misbehaving children pale in comparison to my problems. Oh, you wrecked your car? I win. You got fired? I still win. Your house burned down and you broke your leg and you got dumped? All in the same day? I'm so sorry to hear that. It is just that...I win.

Even mass shooting and terrorism gets minimum attention. Am I even human anymore?

One of the most disheartening things is that my friends and family don't want to talk to me about their problems anymore because they know I win. Trust me, I'd love to have their problems. I'd love to think or talk about anything else. I'd love to help them solve their problem.

Sitting in the hot tub with my mom, she reminds me that there is some benefit to having the slate wiped clean in an instant, to know just what your problem is and to have a laser-focused plan to solve it. Others have to juggle many problems, some with no obvious solution. True.

Also, perhaps I won't be able to be troubled by small stuff down the road when I'm well again. I will literally not be able to be bothered, a phrase I already use frequently. That would be nice.

Are problems relative? Discuss.

Namesake

I was literally trembling as they were numbing my breast for a biopsy of 2 lumps and a lymph node. I was worried I'd botch the whole thing. Slow tears ran out of the corners of my eyes into my hair. The doctor wiped them away with my fluffy robe. This had to be some sort of terrible mistake, a glitch in the universe. Clearly, Mercury in Retrograde was fucking with me again. It simply couldn't be.

It could and it is.

6 days later the dust is settling somewhat. I've been poked and rubbed and touched by too many people to remember. I've been scanned, all the way down my body, with the watchful eyes of people hyper-vigilant to imperfections. My moods have violently swayed from gushing adoration to devastating hopelessness. I've wept in public. I feel like a celebrity that can't handle the fame.

At first my heels were firmly dug into privacy, which I understand now was actually denial. I felt embarrassed to have to disrupt the lives of the people I love. Breaking hearts has always come pretty easily for me...why was it so impossibly difficult to do now?

Support groups and forums were offered to me. I declined them all. In a moment of diva-esque normalcy (is normal such a thing anymore?) I told my boyfriend I would wear 70s paisley and declared a zero-tolerance policy against "pink." And here we are.